Ditched by my Rheumy

[Someonesmother]

Haven't posted for a while, but I have been reading everyone's posts. I had an appt with my rheumatologist and I got a call saying he doesn't need to see me outside the clinic at the hospital, even though I don't even see him there I see registrars. I wrote back and said given my issues and the fact that I find the registrars completely incompetent and only interested in paperwork not about anything else, I feel I have no option but to find another rheumatologist. So now I have to wait 6 months to see a new one at a cost of $415.

My other issue that I wanted to talk to him about the fact that Cosentyx is causing way too many chest infections and I have just landed in hospital with severe asthma after getting a chest infection and virus, 2 1/2 weeks off work. I have zilch leave left until next year now. I just don't know what to do now. Just stop taking it and suffer the continual effects of the disease, but the upside would be not getting so sick all the time. It is pointless calling the clinic as I don't have an appt until end of November and the registrars don't really care. I am at a crossroads and I think if I say no more of it,they will just send me off to cope by myself with no treatment.

[oldtimer]

Is there any mechanism for raising a complaint about your (lack of) treatment?

It sounds as if you are not having the care you need.

[Someonesmother in reply to oldtimer]

I was seeing the rheumy privately because of the lack of care in the biologic clinic. So no point complaining about him ditching me. I just have to suck that up and wait and see a new one in 6 months time. The clinic is well aware of my feelings towards registrars who keep trying to rediagnose me with fibromyalgia when I have no symptoms of it, as a cop out because they don't have answers. That is a 'go away and be quiet' diagnosis. I am tempted to just ring the nurse and say I have decided not to take it any more and see what they say. Probably, Ok see you, have a good life. It is just so frustrating

[Simba1992]

Really sorry to hear SM that you are left without real help. This is actually one of the things I find worrisome in the treatment of RA. There are a lot of meds that can be offered but once all possibilities have been tried out the patients are all to often sent back to their GPs just to manage somehow. Your rheumie probably feels there is nothing more he can do, but leaving the patient without help is inexcusable in my view. Forcing you to go private is really frustrating. I hope however that you will get hope soon. All the best.xxSimba

[Someonesmother in reply to Simba1992]

Thanks Simba. Funny you say that, my GP also said he probably doesn't know what to do with you. Which is no answer for me. So I just get to be so swollen and in pain and so fatigued I will become some inhuman thing. Great. Such a lovely life to look forward to. I am really at the point I don't want to take the cosentyyx any more due to the severe side effects and without some sort of advice from someone more experienced than a brand spanky new registrar, I am quite lost.

[medway-lady]

I'm so sorry to read this and don't know how the American system works as I live in the UK. It seems bad and so does the American system have a sort of patient representative idea that we have called PALS ?

[Someonesmother in reply to medway-lady]

Thanks Medway-lady. I live in Australia, so our system is similar to the UK. We don't have patient advocates though where I live. I guess I go it alone from here on in

[dbestdeb in reply to medway-lady]

If she was in the US, she could just find another doctor that she likes that takes her insurance—simple as that. Shop around until you find one who helps you.

[Someonesmother in reply to dbestdeb]

Sadly have to pay here.

[dbestdeb in reply to Someonesmother]

Whole system is different here. You pay for insurance and insurance pays the doctor. Different insurances cost different amounts depending on how good you want your coverage to be. And different doctors take different insurance companies. Thankfully, I’m a retired teacher and I still get insurance through my former employer and it’s pretty good.

[Someonesmother in reply to dbestdeb]

Here we supposedly have universal health care, but you only get to see registrars at the hospital clinics. I personally pay private health insurance, which I am about to ditch as it is useless and cannot be used to see Drs, only for hospital and surgery, but there are huge out of pocket expenses if you use it. It is not worth it. employers don't pay insurance here, you pay it yourself. So you can have substandard care in the hospital or pay a lot to see a Dr privately. Great options.

[dbestdeb in reply to Someonesmother]

Some employers pay for insurance and some don’t, depending on the job. While I was a teacher they paid. After I retired I pay myself, but at a cheaper rate because I’m part of the large group. Individual policies cost more typically. I’m assuming your income taxes pay for the universal care where you live. Our taxes are lower than most places but we have to worry about the medical. My care is excellent though. I see the rheumatologist (I love her) every three months at $50 a visit and my Enbrel is free.

The system here isn’t bad, as long as you have a good job with good benefits, otherwise you’re pretty much out of luck.

[Someonesmother in reply to dbestdeb]

Our income tax pays some of the universal health care. The systemis clogged and you only see registrars at the hospital. Just talked to them, no appointments until the end of Nov. Oh well I should be crawling in on my hands and knees by then.

[dbestdeb in reply to Someonesmother]

That’s awful. I pray you get some relief before November.

[Someonesmother in reply to dbestdeb]

Not unless there is by some miracle a cancellation, b ut I won;t hold my breath as they triple book most appointment times. Oh well the next three months and beyond will be horrendously painful and fatigues, but at least the new rheumy will see me at my worst.

[Ali_H]

Hi,

I don’t know any thing about cosentyyx but can you tweek your dosage down... I do that with my MTX when I am getting a sore throat or there is something going around school (I teach) that I don’t want. I usually drop to 1/2 dose then go up to 3/4 and finally back to full dose over a period of 3 weeks or up to 6 weeks where I spend more time and 1/2 or 3/4 dose if something isn’t shifting - I’m keeping the right side of well that way but if the dose is lowered for too long the fatigue comes back first to remind me that this isn’t going away (😴😔😴).

All the best

Ali

[Someonesmother in reply to Ali_H]

Hi ALi

No it is a biologic so not able to do that. I have had 11 weeks off work since July last year with chest infections and asthma. I just can't do it any more as I have absolutely no leave left. I know what you mean about people being sick though, we are in the middle of winter here and everyone is coming to work sick and spreading viruses. Ugh. I have only managed three shots of cosentyx since the beginning of the year, so I am really starting to swelol up and suffer. I left a message this afternoon for rheumatology to call me as I don't want to use it any more.

[Ali_H]

Bummer! A lower dose possible?

[Someonesmother in reply to Ali_H]

No unfortunately it will still have the smae effect and not be effective to treat the issue. I think they need to rethink my medication

[sjhewitt42]

Hi my lovely. November is a long way off!!! Where do you live?? All I want to add is that you know your own body and whether something is working or not so if I had to wait that long I would be demanding to be trying something new. Stay strong ♥️ Sarah

[Someonesmother in reply to sjhewitt42]

Thanks Sarah. I know it is a long time but I have no choice. No one can get me in sooner unfortunately.

[sjhewitt42 in reply to Someonesmother]

How frustrating for you on top of everything else!

[Someonesmother in reply to sjhewitt42]

Oh well it is what it is

[petalnumber2]

Hello Someonesmother,

Better late than never, but I have just read your blog right the way through, and I feel shocked by the lack of care you are receiving there in Australia. It makes me value the NHS here in the UK more than ever.

So, I wish I had some answers or suggestions to offer, but the only thing I would suggest is that you don't go it alone with no meds at all. I say this from experience having had to stop all my meds for a couple of months when I was diagnosed with breast cancer a couple of years ago.

I had no idea how bad my RA could be with just pain killers to rely upon. All drugs have their side effects, and there seems to be more talk of chest infections recently. Perhaps I've just picked up on this because I have been suffering with lung problems myself, and like you I have got so frustrated that I too have considered stopping my meds too ! But, I just remember what I was like without my weekly injection and that's enough to stop me in my tracks.

I wish you well and hope you get the help that you do so obviously need ! Big hugs xx

[Someonesmother]

I hope your breast cancer battle is going well. That is just so awful on top of RA.

I am swelling up a lot especially my hands and feet but at least when I do my bloids before the appt my levels will be through the roof and they can see. I just can't be that sick with asthma again it was so awful not being able to get air in even being on high dose of ventolin and pulmicort. There may be nothing else they can give me anyway and they will dismiss me. I have no idea. I will just struggle on til then.